Setting up a new home in a PD friendly way


#21

Hi Worried Wife
Sorry for the delay in responding. You can certainly leave the grab rails for a later date but, as you say, do discuss with the bathroom fitter to make sure he beefs up the walls where the grab rails will screw in. I mentioned the LED lights because they have a very long design life compared with halogen or filament bulbs, so they remove the need to get on stepladders to change bulbs.


#22

Hello Margs just thought I’d see how you are feeling now, a bit calmer I hope and looking forward to your move.


#23

Hi Tot, not very calm as still waiting for a moving date. The chain is fine up to me but the house I’m buyer still have some issues to be sorted out. Hopefully I will move in the next three weeks. Can’t book removals without a date though.

On a positive note next week I am going up North to visit my daughter for a few days and spending sometime with my 2 month old granddaughter. Fortunately I am still ok to travel across London and get the train up to Wigan.

Thanks for your concern Tot and I hope you are coping ok.

Regards. X


#24

That will give you a boost, have a lovely time with your daughter and granddaughter and hopefully when you get back you will have good news about your move. Take care.


#25

Tot I have just spent a wonderfull days with my daughter and granddaughter and except for feeling quite stiff and heavy in the mornings I have felt the best I have for a long time. No swaýing, no having to hold on all the time Ithink the Northern air must agree with me.

I thought I would never feel well again. Don’t know how this happened but knowing that it’s not all bad has made me feel positive.

Still no date for my move though.

All the best Margs


#26

Hello again Aviator
Sorry for the delay in responding to you too. Things have been hectic lately and I just haven’t had the time or energy to keep up with all my correspondence both here and by email. So please accept my apologies for not responding to your much appreciated advice sooner. I’m off work this week and we haven’t got any more appointments to attend until next week so am feeling more relaxed.
Yes, I will definitely ask him to ensure that the walls are prepared for any future grab rails. That makes a lot of sense as does your explanation of why the LED lights would be better.
I’m embarrassed that I didn’t think of these things myself as I am usually quite sensible with this sort of thing. I can’t blame PD for it either as it’s my Hubby that has it and not myself.
Thanks again for your tips and I hope you’re getting the support and advice you need from this group. It’s such a great idea. It is so reassuring to know that there are others experiencing similar issues and willing to share their knowledge and experience.


#27

Hi there,
Hope you don’t mind me coming In on this thread…but it is the early hours and I cannot sleep for stress and was just browsing the forum…
My dilemma is …to move or adapt? Current house is not really suitable but could be adapted to be ok-ish ( long double garage conversion ) but would entail huge upheaval and time. Moving to somewhere purpose built ( I.e. someone else has already done the donkey work) , but where ? and also involves huge upheaval. And if we move ( my husband is a lot older than me) do we stay locally where we have some friends, or go further afield to a part of the country I have always thought about living in but will then , as likely as not, find myself on my own in due course.

Maybe it is feeling so stressed that makes it hard to think clearly about what to do …the various options circled round and round in my head, bouncing back and forth and getting me nowhere. I know I “just” need to take the plunge , decide and go for something. But what?
I also appreciate, having worked abroad outside of the Western bubble, that we are extraordinarily lucky to be in a position to make any choice about all this, but that doesn’t make it any easier to make it, just leaves me feeling guilty on top of everything else.
Any words of advice or wisdom would be much appreciated.
P


#28

Hello Pippa
Sorry to hear you are stressing so much about your housing options, there are certainly no easy answers and it is something that many of us need to address at some point. If I might offer a view, I think you can’t see the wood for the trees at the moment and perhaps what you need to do is get some information about all your options so that you are better placed to make an informed decision. For example: thinking about your current property you say it could be adapted to be ok-ish, which suggests to me you would have to compromise so you need to be asking yourself questions (suggest you write it down if you can this gives you something tangible to refer to and the act of physically writing a record can of itself help) such as what needs to be done to the property to adapt it, is the whole property unsuitable or just the bathroom kitchen bedroom etç ? Do you know what sort of adaptations can be done eg does it have to be a garage conversion if a through floor lift would solve the problem. I don’t know the process in your area but you may be able to get an occupational therapist to visit and offer a view if you don’t know what you need. It may help to get some idea of costs and info about DFG (Disabled Facilities Grant) what the process entails and how long xyz work would take (for your info my bathroom took one man nearly 3 weeks to knock separate bath and wc into one, remove the bath and instal a wet room certainly it was not an easy time but it was only 3 weeks.) I suggest you leave the paper somewhere accessible and amend it as you need to and take some time to do it too.
Moving is certainly an option but purpose built doesn’t mean it will be an ideal one for you and you could find you need further adaption anyway. It may be better to think about moving in terms of what you need rather than restricting it to purpose built.
You are right to highlight the issue of losing your ‘support network’ if you move to a totally new area but equally it can be an issue if you move closer to family.
Sorry I know this is not especially helpful as I have no answers as such but I do think if you take all your questions and record them somehow, as you read and reread them you should find one of the options becomes a front runner and the more information you can gather the more likely it is you will be able to judge the best course for you.
At some point you do need to take the plunge but it is better to take time to work out what your needs, fears and options are then the plunge becomes not such a giant leap into the deep end as paddling in the shallow end and in control.
Good luck, I hope this has helped a little bit.
Tot


#29

Greetings oh wise one ,
Thank you so much for taking the time to reply at such
length and with such sense. I feel a steadying hand guiding me . Will put your suggestions into practice and see what happens.

There is an issue which I haven’t seen on the forum as yet, though am somewhat of a newbie so perhaps haven’t come across it, which is the psychological impact of one’s partner becoming mentally incapacitated or unavailable. Whilst I have always been an independent sort of gal, am finding his absence in that sense quite hard to deal with. And it is not as if he was ever the practical one…far from it, so am not sure how it all works but definitely something going on which is quite disconcerting for someone who generally feels quite capable and competent.
Anyway…thanks again,
Pippa


#30

You are most welcome, glad you found it helpful.
With regard to coping with mental incapacity, as far as I am concerned that is probably one of the hardest things for a partner to cope with whatever the cause. I am going to assume here as this is a Parkinson’s site, you are referring to some form of dementia- please do say if that is not correct, If it is, in my opinion, the hardest time for the affected person is early on when they can veer between being confused and periods of knowing they were confused once past that, to over simplify, they are ok in their own world. For the partner however he or she has to cope with seeing the person they love change as the condition progresses but also absorb the changes this inevitably brings eg once clearly defined roles may become blurred, shared decisions become one person’s responsibility, it is common to feel he or she is not the person you chose to spend your life with and that can cause a sense of grief or even resentment etc. It can be isolating and do not underestimate the impact of exhaustion. It can also be a world of wonderful moments to treasure as his or her mind goes off in wonderful unexpected directions or you see flashes of the person you knew in an unexpected smile and you will laugh, it may be black humour but there is humour. It is difficult to be precise without knowing details, if you are talking of dementia there are lots of different ones and speed and type of deterioration can differ. I make no apology if this is a hard read because the reality is it is hard. Be aware of yourself and take care of yourself, be aware of your limits and get to know what help and support is out there and use it. Finally, and people don’t generally like to hear this but I believe it is something people should think about, Not everyone is cut out to be a carer and just because he or she is your partner doesn’t mean you suddenly develop the necessary skills. Stay true to yourself and you will be ok, Sorry if I am way off the mark as I said, I am assuming and if this upset you which was not my intention at all but equally there is little point in saying everthing will be hunky dory either. Finally please remember this is my opinion but based on some professional experience. I am not sure this will have helped or be what you wanted to hear but I think from the way you write, whether you agree with what I have written or not you would want me to voice my honest opinion, Take care.


#31

Hello Pippa I have just been re-reading my post because something kept niggling away and I have just realised I didn’t actually pick up specifically on what you said - cognitively I am tad slower these days. As with your concerns about housing I get the impression that you do not have a formal diagnosis for your partner or if you do, you don’t know much about it. I am a great believer in information because that helps you make informed decisions and gives you back some control which often goes in these sorts of circumstances. Having said that, it is important that you go at your pace and find out what you need to know when the time is right for you, that way it is not so overwhelming. The fact that you are asking the questions suggests to me that you are recognising something is awry and maybe now is the time to start looking into that perhaps with your GP or consultant or any other professional with whom you may be involved, The sorts of things you mentioned tie in with what I said, eg it seems like there may be the beginnings of changes in your roles which at the very least will be as you said, disconcerting. Note down any questions or unusual incidents and if you can what you feel about what is happening, your mood, changes in your partner, that sort of thing. That sort of information can help make any conversations with ‘professionals’ more productive, although I have to say it is not something I find it easy to do myself. Apologies for the two parter I hope it has been of help and not upset you,.


#32

Yes, you are right on all fronts, including that it was a hard read but also v much what I need to hear and it helps a lot , so thank you, lots .
Husband definitely has Parkinson’s…all started with a supposedly unrelated neck op in 2008 but not named as such till about 2012. I am not in denial…that would be impossible but am struggling with the old “acceptance”which is perhaps denial under another name.
We were managing ok until first hip replacement after a fall, about 2years ago, but he got over that quite well. Second hip replacement this June after another fall has made matters v much worse . Post op delirium was much worse and it is only now that he is mostly back to being himself, as in present to the here and now reality. But here and now reality sucks for him, and as you describe so well, there are times when “he” seems to fade out and I have to switch roles accordingly. So I never know from one moment to the next how he is going to be and how to relate to him. Slipping back into being his partner, with all the expectations of reciprocal roles is easily done but as I have now leaned, is mostly painful when I am jolted back into the reality of needing to be his carer.I think it would be ok if it was one or the other ,but not both. I guess that will come. Funny old world when a deterioration actually has a benefit attached.
Enough said for now. Thanks for being there and willing to respond so thoughtfully and with such insight.
Warm regards, Pippa


#33

I was so relieved to get your response, I wasn’t sure how you would take it and the last thing I wanted was to make it harder for you at such a difficult time. I wish you well and trust you will find the forum a useful support if, as and when you might need it; it is a very safe place to air your concerns and as you will have gathered plenty of people willing to help and support. Thank you for your kind reply to my efforts.


#34

Hello Pippa, just wondered how you are doing since you made contact with the forum. I do hope it has helped although I am well aware your circumstances will be no easier. Don’t feel obligated to respond, just wanted you to know the support if you want it, goes beyond the immediate response. I wish you and your husband well.


#35

Really nice to hear from you. Am feeling pretty low this evening, but more for work reasons than home though combination of the two is not great.can’t see a way out right now. Sometimes I wish I still believed in God and there being some kind of plan , then at least I could rail against him/her/it.
How are things with you anyway?,
Pippa


#36

Hello Pippa, sorry to hear you were feeling a bit low last night. Most folk will say and it happens to be something I strongly believe in and that is the power of positive thinking, mind over matter if you like. Problem with that is it’s easier said than done and when you feel low it’s doubly hard to stay positive. However for what it’s worth, I also believe it is important to be honest with yourself and your feelings is equally important. It is true your husband and me and everyone else will be living a life they never imagined pre PD, but then the same applies to you and all the family and friends around you. So repect to you for being honest. All very well I hear you say, but what can I do about it? Well a couple of things spring to mind and you may find one of these is worth investigating further. First, it may not be the same as believing in God, but meditation can be a powerful tool and is something I keep meaning to try myself but haven’t actually done so yet, yoga and tai chi may also help if you do not already use this medium. There is also something called a gratitude diary which doesn’t suit me as it happens but there is a lot of research which finds this to effective; any search of ‘gratitude diary’ will bring up loads of info including how to do them - be warned though, it is deceptively simple and does need practise. Finally, may I suggest if you have not already found it you take a look at the creative corner where you can find all sorts of inspirational, thought provoking stuff some of which may strike a cord - or perhaps have a go yourself. I haven’t posted anything for a bit but if you care to look, you will see a few of my very amateur efforts! Maybe there is something amongst that which will be useful to you. As for me, I’m doing ok just now doing what I always try to do and that is, taking one day at a time. Take care.


#37

How are you doing Pippa? Do hope you are ok.


#38

Very kind of you to think of us Tot.
Don’t know what to say really…our days are so changeable, within each day that is , and my husband’s mental state is deteriorating which is perhaps the most difficult aspect, but also that it happen inconsistently so I am constantly having to change or adjust how I respond to him. V difficult for us both, though I would always prefer to be in my shoes than his. He keep falling and taking risks because he doesn’t remember what he is able or not able to do , and this seems unavoidable unless someone is permanently glued to his side.
My son is a huge help and some old friends who came to stay recently saw at first hand what it is like here and that in itself was helpful for me because most people don’t get it at all.
Current plan is to move as soon as possible into one level accommodation, pending a more permanent move or conversion.
How are you doing yourself ?
Regards, Pippa